Harry Specters Chocolate Factory

John had the day off yesterday so we set off to Ely to visit Harry Specters Social Enterprise.

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As we now have a fledgling enterprise we thought it a good idea to support this one by buying their products and seeing how they worked.

Christmas is of course the busiest time of the year for a Chocolate factory and there were boxes of beautifully packed chocolates, pretty chocolate lollies, Bears and Santa’s and more delights everywhere you looked.

We were given a very warm welcome despite the pressures of getting massive corporate orders out and it being black Friday.

We met Rosie in the office and then Mona and Shah came through and chatted to us about how they came to set up this award winning enterprise.

Their son Ash who has autism came up with the name ‘Harry Specters’. Its a great name and very easy to remember. Mona had a job working for the NHS in Mental Health but recognised that Ash would never have the chance to be in employment due to the lack of opportunity for people who have a disability.

Mona who has a lifelong love of chocolate decided to open a chocolate factory as a  social enterprise to give her son and others who have autism the chance which they needed to work.

I feel very strongly that until the chance to work is taken away it is very hard to imagine a life which has little structure or meaningful activity.

There are so many opportunities of work for most of us but imagine if the chance of a job was never there and your life desperately needed some structure and purpose to it. For most of us work serves a number of purposes, not least it pays the mortgage and for all that we need and want but it is also somewhere that we have a role, however high or low we are in the pecking order within the organisation there is something people rely on us to do, we also see our colleagues at work, some of them we may get on very well with, others we might be less keen on but we are usually not isolated and lonely while we are at work.

Harry Specters has now been running for 6 years and their annual turnover is impressive. They will soon be moving into bigger and better premises. They have won recognition for the Enterprise itself but also for the chocolates which they are producing, 22 awards in just four years….These aren’t just any chocolates, they are Harry Specters Chocolates!

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We met the team who were in yesterday while they were on their lunch break, what was really great about it was that it could have been a group of employees anywhere at their lunch break they were all sitting around the table and laughing and joking with one another. Someone had just been and purchased a massive box of Krispy Kreme donuts, was it a special occasion I asked? No, Mona answered they are always buying each other treats.

So after tasting many of the delicious, sophisticated varieties of chocolates, laden with bags of beautiful and luxurious chocolates, many of which Mona just kept adding to our bags so we could taste them,  we made our goodbyes.

We spent more than we intended but lots of friends and family will be receiving a box of these very special chocolates for Christmas.

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These days many products you buy have a label saying ‘made with love’ well this product is made with so many things, love, drive, ambition for those who have autism, self belief that there wouldn’t be a label big enough to cover it.

Today I feel inspired, the drive of this  Mother-Father Team is changing lives and giving self esteem and confidence to a large number of beneficiaries and producing award winning luxury chocolates.

For information on Harry Specters please see their wonderful website http://www.harryschocs.co.uk if you are a chocolate lover you will be very tempted too I am sure.

Christmas card orders are being taken…NOW!

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I am very pleased to let you know we are taking orders for Spectrum of Misconceptions first product!

Our Autism Awareness Christmas card is an original design with a subtle awareness message and a festive greeting.

Cards are £3.99 for a pack of 10 and a flat rate postage of £1.50. Please message me for orders and payment details.

It’s been busy!

One of the things my blog is meant to be about is life, so it is a bit of nuisance when life gets in the way and there aren’t the hours in the day to do some writing!

The last couple of months have been a struggle.  My poor Mum had a nasty fall, resulting in broken bones and a miserable hospital stay.

As a student nurse the ‘Activities of Daily Living’ were what was drummed into us and the importance of ensuring that these needs were met during a hospital stay. It was hard to witness the lack of personal care and the malaise shown towards patients who were elderly. Modern medicine is great but if we are to keep people living for so much longer we surely need to offer services that reflect the interventions used to achieve this. Life must have value to and quality. We cannot treat people as though they are no longer important once they reach a certain age.

Mum is now in a nursing home and my Dad still at home in their flat. They have been married for 69 years and it seems very sad so I am spending a lot of time beetling between them and trying to ensure they see plenty of each other.

While all this has been going on we have had Zach’s 21st Birthday Party. It was so great to see so many people who have been such a big part of our journey all in one place. The look on Zach’s face as more and more people he cares about arrived was a picture. Thanks so much to everyone for coming, you are all fabulous!

 

There has also been plenty of work going on with the ‘Spectrum of Misconception’. We cannot thank you all enough for your generosity and support with our crowd funding. We have the first illustrations for our autism myth busting cards and we also have a great logo and a Christmas card.

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Our logo is based on the triad of impairments which are often referred to in relation to the autistic spectrum.

Triad of Impairment is used to describe the main features of autism. These are social interaction, Communication and language and rigidity of thinking.

The triad of impairment will tell you all about the most negative aspects someone who has autism may have. I am sure I don’t need to explain the meaning of our logo!

We are now working hard to get the Christmas card out in a timely manner so that it isn’t too late for those who want to buy it. I know some people are incredibly organised and buy cards early so  I can’t bank on everyone being like me and buying, writing and posting my cards on the last day of posting.

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Our Christmas Autism Awareness message is….Autism comes in all shapes and sizes! It will be on the inside left cover, so subtle but lets hope the message hits home.

We have all we need for the packaging so can post cards out to online orders. All our packaging and products will be environmentally friendly and recyclable.

Our Christmas card is a beautiful design which has a very subtle autism awareness message. We wanted our card to be able to sit happily alongside others whilst raising awareness at the same time. I hope you will love it as much as I do.

We have a face book page and have been working on the website. I am pretty much totally useless with anything on a computer so am waiting for expert support to make them look as interesting and professional as we want them to be.

Please keep an eye out for our Christmas Card design and if you would like to order some let me know, I promise it will be ready as soon as possible.

The website (when it goes live) is at http://www.spectrumofmisconception.com and the facebook page is Spectrum of Misconception.

I look forward to hearing from you (fingers crossed!) 🙂

 

 

 

 

 

Crowd Funding update and massive thanks!

Hi all, thank you so much for all of your wonderfully generous donations. We really appreciate it. We think it’s high time to let you know what our plans are and what progress we are making. After deliberating over the type of product we wanted to create, we felt strongly that it should somehow link closely to Zach’s journey and autism awareness more generally. For all the goodwill that is out there, there are still so many untruths, misconceptions, and myths that we need to work together on to dispel and change.

 

For that reason, we have decided to capture many of the mainstream misconceptions of autism and to do our best to make people think differently. We are doing this by employing a wonderful artist and illustrator to capture some of these concepts pictorially, which we will then be designing onto cards. The plan is for the cards to  be brought to Zach’s base where he and his team can organise and process orders, package the cards, and post them out to customers. We plan on opening an online store where people can buy the cards, interact with like-minded people, and give us their own ideas for future designs and concepts.

 

We have finalised the name of our product, and are putting the finishing touches on our logo and first two concepts. For our next update – coming soon! – we will upload some of these images to show you the process.  We would really like to get your feedback and input! We will also post some of our ideas to online forums to get feedback from other like-minded people in the hope that we can truly offer a product that will be valued by those who buy it. Finally, we’ll set up a Facebook group in the not-too-distant future to facilitate further discussion as we continue to develop our concepts and corresponding designs.

 

Thank you so much once more for your donations, and watch this space for further updates!

Carer Burn Out!

What happens when Carer’s burn out?! Who picks up the shattered carer pieces and tries to put them back together again?

Over the years it would be fair to say I have crashed and burned a few times, the degree of care tips slightly with something, a family bereavement or as at the moment my parents needing more support and I feel like I am in free fall to the bottom of a very deep hole.

The pressure of needing to be able to care at all times, 24 hours a day and 365 days a year is huge. If all those who care stopped to think about it, we would probably all be in free fall.

When it comes to caring for Zach we have a plan, and we hope we are heading in the right direction. We have the best support in place for him that we could hope for and he is learning and for the most part enjoying life.

We no longer have any overnight short breaks for Zach which was a step backwards for him and us. Zach had got used to spending a couple of nights away from us each week which was good for his independence and it gave John and I a little window of time to do ‘normal’ couple things, a meal or maybe a film.

However eventually we will find somewhere which will make a suitable Transition House for Zach and some other young people who are at a similar stage in their journey and he will start to have independence from us again. Although it will be a slow process it will be good to know that we are moving forward.

So I have my job caring for Zach, there isn’t a day goes by when I am not considering things which need to be put in place, looking for interesting trips out, making appointments, buying equipment or wondering what to put in his nutri-bullet that night.

I have my paid job, 6 hours a week as a Community Staff Nurse, I visit patients in their homes who are in need of nursing care. Many patients are at the end of their life and require Palliative Care, It is so important that I am able to reassure both patients and family and friends. My head cannot fall off.

My parents are both 93, Dad is 94 on Sunday and my Mum in September. I am incredibly lucky to have them both and physically they are both in good health.

For a number of years my Dad has been almost completely deaf and my Mum has had Alzheimers Disease. This combination makes communication very difficult, my Mum often struggles to find words and my Dad can’t hear them even if she can.

Over the past months things have become increasingly difficult for them both. My Mum has severe anxiety at times and my Dad can’t seem to find a way to calm and reassure her. Other days my Mum is lucid and cheerful while my Dad is tired out and sleeping. My Mum is lonely and feels that they never do anything interesting or laugh with other people and has days when she doesn’t want to get out of bed.

The Carer’s go in at 09.00 every morning and my Dad panics if Mum refuses to get up! With age, my Dad has become inflexible and change aversive which I get, but it is also understandable that some days my Mum doesn’t want to get up.

I have been getting more and more frequent phone calls asking me to go round and help, I can hear shouting in the background, speak to my Mum on the phone who sounds distressed and feel I have to go, most people would. The idea that my elderly parents are struggling to cope and I might just be able to calm things down is what makes me go. It sometimes takes a while but we usually get there.

It is strange how one day you are bumping (not gliding) along like a sort of busy Water bird, paddling madly out of every ones view and then all of a sudden you feel like a dying swan. You don’t feel able to bump along anymore, the mass of responsibility that you feel at making sure everyone else is doing okay completely overwhelms you and you crash and burn.

I am at the moment hopefully back on the way up from my latest burn out, I have organised GP and Social Work visits for Dad and Mum which I hope will be fruitful.

I have to acknowledge I am only human and I don’t have a magic wand. I can’t change what has happened but I can help to change what might happen if help is put in place.

John is as ever a massive support, as are wonderful friends and it certainly helps to talk.

Sadly this is all too common for Carer’s, the isolation, expectation and responsibility just weighs too heavy.  It is hard to know what the answer is, we can’t predict what will happen in our lives so can’t prepare and alter the course things take.

I am sending love and strength to all those who are Carer’s, you do an amazing job. It is probably the job with the least recognition and plaudits but one of the toughest there is to do.

 

 

 

 

 

 

 

Fingers crossed for humanness!

Work… it’s one of those things that we often don’t really feel like doing.  I am a Community Nurse and I often don’t feel like going to work but once I am out there visiting patients I am fine, I enjoy my job. I have been a nurse for over 25 years and it is part of my identity and who I am.

Freud said ‘Love and work… work and love, that’s all there is.’ And ‘Love and work are the cornerstones of our humanness.’

Imagine if you never got the chance to work, there was never going to be a job for you.

This is the case for many adults who have learning disabilities. In 2015 just 6% of adults who have learning disabilities were in paid employment.

Many people who have LD are very capable of work and would enjoy a job.

Having a learning disability means you are marginalised by society. Despite it being 2018 the world is still not inclusive.

When you think about jobs, the majority will have a social aspect to them. You are part of a team and you are valued by the rest of the team. This helps our self esteem, we all like to feel useful and appreciated. A job helps prevent social isolation.  In turn ( I do hear some of you saying your job is really bad for your stress levels, I promise!) this helps our mental health and boosts our feelings of self worth. All very important for over all wellbeing.

Despite Zach being non verbal, having autism and complex needs he could work with the right support.

A few weeks ago we decided that the exercise equipment we had at thezachproject was no longer needed, he regularly goes to the local gym which is far better for him than using the equipment on his own. We gave the equipment away and were left with an empty room.

I had a few thoughts about what we could do with the room but none of them were very inspirational. I asked the Beam team if they had any ideas.

Cormac Duffy who is the operations manager came back to me with the idea of a Social Enterprise so that Zach had the opportunity to contribute to the world of work and once set up we could get other young people involved.

To say I was excited is an under statement, poor Cormac had to spend an hour in the car with me rambling on about what we might do. I then sent a mass of texts with what were probably pretty useless ideas! I was buzzing.

I spoke to a friends and family asking if they had any ideas and began to piece together what seemed like a plan which has a great USP!

We now have the idea for Zach’s social enterprise, it is something which he can be totally involved in and will enjoy doing. It will play to his strengths and abilities.

You may wonder what Zach will gain from having a job. His life at the moment looks quite busy with learning life skills, leisure activities and pub lunches however we are all entitled to dignity and dignity comes with work, being included and contributing to the working world.

We have much work to be done before the project is ready to roll, business plans, decisions about what the product will look like and where we will sell it but we are already planning and on the journey.

We need a start up fund and if you feel able to contribute we would be very grateful indeed. We want our product to be as good as any out there, if not better! We need a fund to achieve this.

Please follow the link if you feel inspired to contribute 🙂

JUSTGIVING.COM and search Rachel Saysell

 

Thank you xxx

 

 

 

What is the 2nd April all about?

April is World Autism Awareness Month. The United Nations deemed April 2nd World Autism Awareness Day 11 years ago.

The idea being to raise awareness, they committed to promotion of full participation of all people who have autism and ensuring they have the needed support to be able to exercise their rights and fundamental freedoms.

Sounds good so far.

I wonder however, what this is supposed to mean to the thousands of people who have autism and their families who struggle every day to meet the needs of someone they love who has autism and all the complex issues which come with it.

I remember thinking when I was maybe less cynical it was a good thing but how has it changed people’s perception and what difference does it actually make, how far have we come since the first World Autism Awareness Day?

 I am autism weary. It was never going to be an easy journey but with a massive increase in the prevalence of autism, 1 in 150 and despite being 11 years on not very much seems to have changed.

World Autism Day has somehow become a celebration of autism, but as a friend asked ‘why would we celebrate autism’. I don’t see many friends who have a child who has autism throwing a party. Autism is at best difficult and at worst wrecks families and lives.

Over the last 11 years there has been far more in the media regarding autism. Many of the public have an inkling about the triad of impairments but have little understanding that not everybody with autism is the same.

It is so rare for the media to share anything other than moderate autism. The exception is the horror stories of Winterbourne View and Mendip House to name two. Other than these grim headlines people who have severe autism, behaviour that challenges and complex needs are never mentioned.

What we can do to stop the vile abuse of power and violence to those very vulnerable people living in such establishments which I am sure sadly still exist, is let people know more about them and stop them leaving the communities they grew up in and make them visible.

If there is something in the news or on television friends and family eagerly ask if we have watched it. I have to say I see enough autism in my life.

The A Word which is a drama recently shown on the BBC portrays a cute little boy who has autism. All our children were cute when they were young, autism or not. What about people who are adults who have autism?!

Children grow up and it may come as a shock but adults do have autism, you just don’t see them very often!

 Channel 4 recently showed a program called ‘Are you Autistic’ which was hosted by young ambassadors of the charity Ambitious about Autism. I’m not suggesting life is easy for these young people but they are all able to communicate and indeed present a television program.

I emailed Channel 4, I applauded them for airing a program about autism but I explained that they were just reinforcing public perception of what autism is.

Their response was that autism is such a wide issue and they couldn’t possibly cover every aspect which was the reason they chose to cover this particular aspect.

My response (I do always like to have the last word, as my poor husband knows only too well) was ‘What is massively disappointing and sadly predictable with all the media coverage of autism is that despite it being intricate with so many different avenues to discuss it is always the same aspects which are shown and discussed.

I hope that Channel 4 will be brave enough to make a program which is not just a reinforcement of what is already the majority of the public’s perception of autism’

I don’t expect they will.

How about World Autism Awareness Day instead of encouraging people to change the colour of their lightbulbs (which is never going to bring about change! Who even thought of that?!) sharing facts and figures about autism over the month of April.

Engaging with broadcasters and media who are willing to bring something different to the table and share with the public what autism at both ends (and in the middle) of the spectrum look like.

The more complex aspects of autism, perpetual anxiety, the difficulties with transition, the lack of suitable services, gut problems, what happens to people when they leave school and have nowhere to go to continue to learn, lack of peer groups, social isolation the list is endless.

What can be done to help people who have autism and are struggling in a public place, why getting out and about is as important for people who have autism as any of us, what can be done to make it easier to do this.

The Equality Act, Disability discrimination, the Care Act, the Autism Act and all the other things written in law which are ignored far too frequently. Empower those who have autism, parents and carers!

Engage with retailers, food chains, employers, towns and cities to make them more autism friendly. Ask sports centres, clubs and recreational facilities to provide inclusive activities. To make reasonable adjustment without families and carers feeling side lined and excluded.

World Autism Day and month should not be about celebration, celebrating autism is something of an oxymoron to me but should be about encouraging change and helping those who have autism have a life which we are all at ease with.

 

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Zach’s fingers are crossed for change and progress!